Seems like life is a palindrome
Cry when you die, cry when you're born
In between it's all about the ups and downs
Add them all together, they'll cancel each other out
— Glen Phillips, from "Duck and Cover"

Random Email Updates from Sarabeth

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Some Truths about Gratitude

Dec 26, 2011

Dear Family,

This is only part of an update, and much more is forthcoming--please stay tuned! Meanwhile, in the midst of this Judeo-Christian Holiday Season, I offer you the following thoughts (not only my own) concerning Gratitude.

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Ben didn't speak till late, and he wasn't very good at it, according to the experts whose advice also didn't make sense (speech therapy for a two-year-old?? Did our ancient ancestors require such treatments??). He spoke hesitantly, using only tiny sentences well into his fourth year. He barked orders and demands, and refused to ask questions. He couldn't pronunce “f” or “s” or “r” and a number of other sounds. He mixed up “you” and “I” till he was about five. He was often unintelligible to his own parents, forget about strangers (whom he would barely talk to anyway). He got angry when we couldn't understand him. He had a hard time understanding what we said, and never seemed to pick up on anyone else’s language at all. He repeated questions over and over and over. He screamed and whined a whole lot more often than he articulated his needs. And never, not even once during his early childhood, did he even experimentally attempt to say “please,” “thank you,” “excuse me,” or “you're welcome.”

I was staunchly opposed to forcing him on this last point, concerning the use of manner words. I reasoned that at the very least, a person should not be coerced to say something he does not mean. But at the same time, Ben's “rudeness” niggled and worried me almost more than everything else: how could a human reach the age of six and never ever feel appreciation, or the desire to please others?? I mean, it's not like I was hoping for a subservient child who would win a Miss Manners award or anything... But either Ben never felt thankful (and he certainly seemed constantly grumpy and sad), or he just "wasn't ready" to model kind language, or he simply could not say these words. And none of those explanations made a whole lot of sense.

How long were we going to have to wait till Ben was ready to use some of those superficial pleasantries??

Turns out, we had to wait until a very recent Wednesday.

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See, I never realized that GAPS explained, in a general sort of way, Ben's brain's inability to speak in conventionally kind ways. I am now sure that he _would_ have been ready years ago, if he hadn't been so sick, to learn all the things that have been and continue to be so hard for him to learn. I mean, it's common sense: we don't expect a person with a broken leg to run a marathon until his leg is healed, right? In retrospect, I am discovering exactly how challenging it was for Ben's brain to make it through each day--forget about making all the developmental leaps necessary in order to understand the complex application and pronunciation of the word “please.”

The challenge is always, in the moment and going forward, understanding what mental illness looks like, and how healing happens, and what to do while you're waiting for the loooooong process of the brain's catching-up.

And then occasionally I am caught breathless, absolutely astounded by what can happen inside a human head, invisibly and yet perfectly obviously, as the body begins to heal. Orchestrating my son's healing is full of a whole lot of tedium and hard work, but every so often (and recently it's a whole lot more often) I witness his completely out-of-order human development as it spurts forward in remarkable ways. It iis truly astonishing.

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Okay, so the Wednesday in question: we were in the car, and I mentioned to Ben and Jem that Christmas was approaching, and that it would be a good time to start practicing saying “Thank you.” I said this casually, as if Ben were a normal child who says normal things when prompted, but as I've already noted, he had never, ever said this phrase out loud. I was trying to see whether he was finally ready to push through his mental blocks surrounding the issue.

“Why?” Ben asked.

“Because,” I said, “this year, I do not want you to accept any Christmas presents unless you are willing to thank the people who give you the gifts.”

“But I CAN'T say it!” Ben wailed. I knew what he meant: that he had never verbally thanked anyone for anything, ever.

“Oh, but I think your brain is ready to let you do that,” I said, trying to hide my doubts with cheery certainty. “That's why we can start practicing now.”

“I _definitely_ can,” Jem assured me immediately. “See: 'Thank you!' I can definitely say it, so I can get presents.”

But Ben was not so sure. “But what if I don't want to? ...And how would they know I don't want presents, if I can't say it? If I'm going to tell them that I don't want to say it, then I would ACTUALLY be saying it!” I told him I'd let his grandparents know that he wasn't accepting gifts, if necessary, but that I was pretty sure he could master the art of appreciation. “But I CAN'T say it, I CAN'T!!!” he repeated, over and over. And then there was silence in the back seat.

About three minutes later, I heard a very quiet voice: “I think I can,” Ben said, and then again: "I think I can.”

“You'll practice ahead of time. You can say the words, and it's just that you have to get your brain to _let_ you say them at the right time.” I told him how there are kids whose brains don't let them speak to communicate at all, even though they can talk perfectly well. It's just that for some reason, their brains only let them parrot and echo. I told him that that's why we're healing him up, so his brain can do all the things he wants it to.

“I think I can,” he said again. “But I want to practice with only one person.”

At lunch he wasn't quite ready to practice. Maybe later.

And then, Papa came down, and we filled him in on the plans for Christmas. Jeff wondered if Ben might want to practice ahead of time. This time, Ben said that actually, he wasn't going to practice at all. Changing his mind almost immediately, he then announced that he wanted to practice. With _just_ Papa. With nobody else around. In the other room.

He skipped into the bedroom, and I heard the muffled sound of Jeff talking, and then the staccato voice of my small son, who said: “Thank You! ...THERE,” he said, bursting out the door with a huge grin, “I SAID it!! Now I can say it! ...I can almost _definitely_ say it with Grandma and Grandpa, because I said it with Papa!”

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“But what if I forget to say it, even though I can now?” he asked, later in the afternoon that Wednesday. I said I'd remind him. “But what would you say?” he pressed. “I wouldn't want you to just say that I should say it.” Maybe we should have a code, I suggested. Ben liked the idea, but I couldn't come up with a non-dopey Reminding Password. Finally, Ben came up with an elegant solution all by himself: “You can ask me about how much I like the thing, and then I'll remember that I should say it!”

"But what if I say it too fast?" Ben wondered then. "And should I say it _every time_ I get a present, or just once? When do _you_ say it? And what if they don't hear me?..."

By the time Wednesday evening rolled around, after a few more practice rounds during which I handed him cups of water, etc., Ben was truly thrilled. “I'm so GLAD I can say 'Thank You' now!” he said, practically skipping into the kitchen. “It feels so GOOD to say it!” Then he asked, “Why couldn't I say it before??”

Well, gosh, think back to this morning--why the heck not?!? I didn't say that, but as usual, when Ben gets retroactively curious about his own strange behaviors, I can't give him many answers. “I don't know,” I said. “It's like your brain just couldn't before, but now that you're healing, you can do all sorts of things that you didn't used to think you could do, like eat hamburger.”

“And say Thank You!” Ben reminded me, for clarity.

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He wants to know: “What are all the words that are like Thank You?”

I consider the sort of scripted manner words in this category: “Please, Thank You, You're Welcome, and Excuse Me.” I don't realize till later that these are phrases that all necessitate a complex social understanding--a _caring_ about what other people think, and a non-autistic desire to participate in the dance of social interactions.

A few days after the initial excitement, Ben thanks a total stranger (the teacher at our rock climbing class, which was a whole other achievement/victory/accomplishment). A few days after that, Ben asks again about the list of words “like that." "What are they?” he wants me to say. I give him my short list of manner words, and then he adds, “another one is: 'I Love You.'”

Interesting, I think.

“I can't say that one,” Ben tells me.

“Well, that's okay,” I say, “you'll be able to when you're ready to. That's not one like 'please' or 'thank you,' something that I will ask you to say from now on.”

“Why wouldn't you make me say it?”

“Well, 'I love you' is different... I could practice with you, if you want.”

“I don't want to. I can't say it.”

“That's totally fine. You should only say it if you really mean it.”

“But I do mean it," Ben says sincerely. "I mean it _all_ the time--an' I just can't say it.”

Later, this really, really chokes me up.

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A few days later, Ben videotapes his origami dragon while making roaring noises quietly into his camera's microphone. I've never seen him do an imaginative-play sort of activity like that ever before.

It's like we're taking an intense flash through Ben's toddlerhood, only about six years late.

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Steps In the Right Direction this Christmas:

--Ben (and Jem) made eye contact and chirruped "Thank You!" _every single time_ they received a gift.

--Both children fed themselves all meals, plus snacks, with a bare minimum of fanfare (last year, Ben required spoon-feeding at carefully timed intervals, had to be read to in a private room for forty-five minutes in order for him to be able to drink his green juice, was still regularly gagging and even throwing up during meals, and mealtimes took him a loooooooong time (sometimes multiple hours)--and did I mention that he couldn't feed himself??).

--For nearly eight years, and especially in social situations, either Jeff or I have had to be on Ben Duty during nearly his every waking moment. Ben Duty entails, among other tasks: helping Ben to communicate and understand what's going on around him, helping him to deal with the anxiety and obsessions and confusions in his poor little brain, helping him to be distracted and entertained to compensate for those challenges, and talking him down when possible but also dealing with a tremendous number of screaming meltdowns when things just become too hard for him. But the point is: the difference between this Christmas and last was that there were many, many moments this year when _both_ Jeff and I were off Duty. There were many times when the two of us were chatting with other adults....and Ben was both taking care of his own needs, _and_ having fun.

--There were no large meltdowns at all, from either child, despite lots of noise and action, tons of presents, lots of people all around, lots of tempting food to have to look at "that we don't eat," and even unexpected hugs from relatives.

--When Ben was feeling stressed, he actually sat on my lap for a few minutes, and let me stroke his head (last year, he required a Christmas day cooling-off period in a private room, while allowing me to touch him not at all, and obsessing for many long minutes about some perceived Big Issue that he simply could not let go).

--In the late afternoon, Ben and Jem both went out with their cousins (last Christmas, Ben was too tired to go out much at all, and was way too out of his league in terms of social dynamics for even the simplest of group activities) and played a long, involved, and chilly game of hide and seek.

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I hope that you and yours are warm and cozy and full of Good Cheer, whether religiously inspired or simply because of the awesomeness of being alive.